Supporting the role of community members employed as research staff: Perspectives of community researchers working in addiction research.

Community researchers are laypersons who conduct research activities in their own communities. In addiction and HIV research, community researchers are valued for their insider status and knowledge. At the same time, their presence on the research team raises concerns about coercion and confidentiality when community researchers and participants know each other personally, and the work of navigating between the worlds of research and community leads to moral distress and burnout for some community researchers. In this paper, we draw upon the concept of 'moral experience' to explore the local moral worlds of community researchers in the context of addiction research. In February and March 2010, we conducted focus groups with 36 community researchers employed on community-based addiction studies in the United States to elicit perspectives on ethical and moral challenges they face in their work and insights on best practices to support their role in research. Community researchers described how their values were realized or thwarted in the context of research, and their strategies for coping with shifting identities and competing priorities. They delineated how their knowledge could be used to inform development of research protocols and help principal investigators build and maintain trust with the community researchers on their teams. Our findings contribute to current understandings of the moral experiences of community members employed in research, and inform policies and practices for the growing field of community-engaged research. Funders, research organizations, and research ethics boards should develop guidelines and standards to ensure studies have key resources in place to support community researchers and ensure quality and integrity of community-engaged work. Investigators who work with community researchers should ensure channels for frontline staff to provide input on research protocols and to create an atmosphere where challenges and concerns can be openly and safely discussed.

Case managers' perspectives on the therapeutic alliance: a qualitative study.

PURPOSE: In order to understand the nature of the therapeutic alliance in intensive case management, this study used qualitative methods to assess the dynamics of the case managers' relationships with their consumers by examining their perspectives on their own and their consumers' likeability, how helpful consumers perceive them to be, as well as their expectations for their relationships with their consumers. METHODS: The study employed content analysis of open-ended responses from 49 intensive case managers about their consumers. RESULTS: From case managers' responses, four themes emerged describing the dynamics of the case manager/consumer relationship: motivation, monitoring, creating dependency, and being there. CONCLUSIONS: The current qualitative findings suggest that current constructions and measures of the therapeutic alliance developed in psychotherapy research are not fully capturing the ways in which the unique structure and constraints of intensive case management influence relationships between workers and consumers.

Misbehaviors of front-line research personnel and the integrity of community-based research.

There has been little empirical research into misconduct and misbehavior among community research workers who recruit and collect data in vulnerable and marginalized health populations and are also members of those same communities. We conducted qualitative interviews with community research workers and traditional research assistants to understand the context and consequences of misbehaviors that pose a threat to research ethics and data integrity. In our sample, more community research workers acknowledged engaging in research wrongdoing than did traditional research assistants. These behaviors were most prevalent among community research workers who were not well-integrated into the research team. We suggest best practices for investigators to promote an environment that supports research integrity in research projects that employ community research workers.

Termination of parental rights proceedings: legal considerations and practical strategies for parents with psychiatric disabilities and the practitioners who serve them.

TOPIC: This article examines the issue of parenting with a psychiatric disability and the risk of custody loss for these parents. PURPOSE: The purpose of this article is to examine the parental rights of parents with psychiatric disabilities and the use of the Americans with Disabilities Act as a legal defense. The current status of the law on terminating parental rights for people with mental illnesses is reviewed and the use of the ADA as a defense is described. Other defense strategies for parents and practitioners are also addressed. SOURCES USED: Sources for this paper include published literature and research on issues related to parenting with mental illnesses. Pertinent American case law and federal statutes were also examined. CONCLUSION: While using the Americans with Disabilities Act as a defense has had limited success in state termination of parental rights proceedings, some courts have declared it applicable in certain instances. Legal strategies such as raising this issue early in the termination process and practical strategies such as having a child care emergency plan are crucial to parents and practitioners who are navigating the child welfare system.

Neglected voices: consumers with serious mental illness speak about intensive case management.

This study explores early alliance formation between adult consumers with schizophrenic-spectrum disorders and their case managers from the consumers' perspectives using a prospective, cohort design. While quantitative studies have demonstrated positive links between the alliance and some client outcomes, such methods cannot reveal in concrete and authentic ways what consumers want in the case management relationship. This study finds that consumers can provide tangible and insightful information about the specifics of their case management relationships, confirming previous findings about the desire for connection with others, while extending it to include the desire for connection to the social world through the case manager relationship.

The working alliance in pediatric chronic disease management: a pilot study of instrument reliability and feasibility.

Findings are presented from a pilot study to determine the reliability, relevance, and feasibility of child and adult versions of the Working Alliance Inventory, adapted from psychotherapy research for use in the management of chronic childhood hematologic disorders. Thirty-four children, 13 adolescents, 43 parent/guardians, and 4 health-care providers participated. The adapted scales, called the Working Alliance Inventories for Chronic Care, had strong internal consistencies for all versions; retest reliabilities were generally acceptable. The instruments were feasible to use and understandable for children 9 years and older, parent/guardians, and health-care professionals. Recommendations for additional research, using this promising group of alliance instruments, are provided.

A family of trust: African American parents' stories of adoption disclosure.

Dramatic increases in same-race adoptions of African American children have stimulated interest in the experiences of these families, including those related to disclosure. Data from interviews with 27 African American adoptive parents (7 mothers and fathers interviewed conjointly, 13 mothers interviewed alone) from 20 different families revealed the following themes: (a) efforts to prevent trauma to the child; (b) respect for the child's differentness and birth history; (c) developmental decisions in disclosure; (d) children's questions as motivations for disclosure; and (e) parents' feelings about disclosure. Findings confirm the importance of psychoeducation regarding methods and timing of disclosure and provide support for comparative research on contemporary disclosure, including racial differences in process and content.